Monthly Archives: July 2013

Perfection Paralysis

Cancer, Mitotane, My Novel- Alex, My Novel- Anne, Writing, Writing Group July 27, 2013 Leave a comment

I woke up this morning dreaming about Anne. Just like most dreams, two hours later I have no idea what it was about. But I see it as a good sign—I am immersing myself in Anne’s life, which can only help me with my novel.

In reality, I don’t need more plot ideas or character background. I have all of that. What I am lacking is the motivation to sit down and write. “Seat of the pants to the seat of the chair.” Steve threatened this morning to make me stay at Joy’s cabin until I finish the novel. He will come and visit me but I won’t be allowed to leave!

As though in 39 years of marriage he has ever been able to “make” me do something. He asked how close to completion is the novel? 90%? I must have really fooled him about the progress I have been making on the book. I only wish I were at 90%…or even 50%.

My excuse when I was working was that I didn’t have time to write. So what’s my excuse now that I am retired? It’s the same one that has always been the source of my procrastination—perfection paralysis.

When I was working on my Alex novel, I wrote a diary that was not going to be part of the book. Its purpose was to provide backstory, to help me understand how Alex got to where she is. The patient members of my writing group were the only intended audience so (no offense) I wasn’t plagued by the need for perfection. The ideas flowed. I looked forward to writing at the end of my work day.

Now I don’t work. And yet I don’t write any more than I did when I had a job—maybe less. Time to fix that. For, unlike Mick Jagger who just turned 70, I don’t have a career spanning 50 years to look forward to. How fair is it that someone who has lived his lifestyle is now 70 and healthy, (even the epitome of “70 is the new 50”) when I, with my (almost) squeaky clean life, am diagnosed with adrenal cancer at 57?

There is good news along the way. According to an ultrasound last week, I have a “good-looking” thyroid. And the cyst on it is just a cyst. Nothing to worry about—50% of people have them. I’ve also dropped my mitotane consumption (once again) from 5 to 4 pills a day in an effort to lessen the side effects.

With the good comes the bad. Next week I visit the dermatologist because of a suspicious mole or two. Wouldn’t be much of a concern if not for the two melanomas I had removed back in 2002. The appointment with the dermatology surgeon for the following week is already scheduled. Hoping that it needs to be cancelled…..

Nothing to worry about

Cancer, Mitotane, My Novel- Anne July 24, 2013 Leave a comment

Woke up at 4:30 this morning to check my iPhone for the email from DHMC letting me know that I have test results available. It was there and suddenly I was wide awake. So was Steve.

Sure enough, the CT scan report supports what my oncologist said—nothing to worry about–but I wasn’t reassured until I saw it in writing. Does this mean I don’t have confidence in my oncologist? Or am I just a pessimist, expecting the “other shoe to drop”?

Everyone says I have such a positive attitude. I try. Really, I do.

But I’m more of a realist than an optimist. And the prognosis for ACC is “grim.” “Dismal.” If you believe the medical journal articles.

DDT use in residential areas was banned on November 20, 1969, one day and 43 years before my surgery. Yet twice a day I take mitotane, a DDT derivative. As of today I am still Stage 2. And the mitotane is supposed to keep me there. So I am committed to ingesting it for as long as I can. Regardless of the side effects.

But all chemotherapy is poison so I don’t suppose I’m any more special than the thousands of other people who take it every day.

I feel as though my life has been put on hold since my CT scan last week. I’ve heard other cancer patients say their lives are broken down into the time spans between scans.

In the last week I haven’t worked on my novel except to change Lexi Rae’s name to Poppy. And in order to firm up Poppy’s age, I had to research the hippie movement. (If you want to know the connection, you’ll just have to read the novel. Once I finish it….) And that was where I learned the date that DDT was banned.

Hard to believe that I was just months away from meeting my husband. This February we will celebrate our 40th wedding anniversary. And celebrate it we will with a trip to Hawaii. We’re planning on flying from Arizona to Hawaii then taking a seven-day cruise around the islands. That’s the plan today….but we’re learning to go with the flow….

 

Wannabe designer

Family, HGTV/DIY/Design, My Novel- Anne, Writing July 21, 2013 Comments: 2

My daughter Joy has graciously allowed me to stage her cabin at Mountain Lakes. I’m hoping it will help her sell it while allowing me to leverage the thousands and thousands of hours (it only seems it, really) that I have spent watching HGTV and DIY.

I purposely went to the cabin alone. With my notebook in hand, I toured the cabin and recorded measurements of windows, chair cushions and beds, easy, inexpensive projects that mainly involve buying or sewing. I indulged myself just a little by listing the projects I would do with an unlimited budget. And more skills than can be learned from watching TV.

That’s where husband Steve (pretty talented as a handyman, simply lacking in motivation at this point in his life—he’d much rather be on the golf course) comes into the picture. He wasn’t invited because he would have found plenty of reasons why the DIY projects can’t be done.  He should know by now that the majority of them will be done. And he will help do them. Or rather, I will help him do them!

I watched a video on replacing the screening in window screens (amazing how easy it looks!) and think I’ll tackle a few windows at the cabin. That way when I get to replacing them at our house I will be an expert. This I can do on my own….I think.

It’s such a cute cabin, it would be so much fun to add my stamp to it before it is sold. Joy hopes that the next time she sees it is for the closing. That’s liberating for a wannabe designer like me as it will be too late for her to complain about my decisions!

Joy doesn’t know that I spent some time there the other morning actually working on my Anne novel. Writing! I know she would be happy that the cabin is serving a purpose even while it is unoccupied. Amazing how a change in environment can get the creative juices flowing. No TV. No telephone or cell service. Nothing to distract me from that blank piece of paper. I wrote a page about Anne doing renovations to an apartment she owns. Next thing you know, I’ll find a way to incorporate cancer into her life……..

Of course, that was before my decision to stage the cabin. Now if I go out there I’ll be compelled to do something besides write. Probably involving a paint brush.

What a difference a day makes

Cancer July 19, 2013 Comments: 2

But does it? Yesterday was supposed to be my routine three-month scan at DHMC. Confirmation that I am one of the 20-30% of ACC patients who respond to mitotane. Whose cancer is kept from recurring by enduring the side effects of a DDT derivative.

We were disappointed that the CT scan report was not available by the time we met with my oncologist but we were pleased that he was able to bring up the scans on his computer.

We weren’t so pleased when he pointed out the arrow the radiologist had inserted next to the cyst on my thyroid. A new cyst? No, he was able to show us that it was on the April CT scan. It just happens that July is when the new batch of residents arrive with a fresh perspective on old problems.

The issue is that neither of us remembered hearing about a cyst on my thyroid. (And when I got home and reviewed the prior CT scan reports I found no mention of a cyst there either.) My oncologist “reassured” us that people have thyroid cancer and die of other causes without ever knowing they had it.

Somehow that was not reassuring. Seems as though that is what we’ve read about ACC. But it’s not my situation.

And the lesion on the liver. Another shocker. I can’t seem to find that in the prior CT scans but daughter Joy thinks that has been there right along.

The scan should have been read by today. My oncologist goes on a two week vacation next week. (My cancer has been a series of timing issues.) Luckily I see my endocrinologist next week. She should be able to address the thyroid cyst. She will address it.

And then there’s the atypical mole on my back, circled in black marker by my oncologist. It might not be so bad if I hadn’t already had two melanomas removed (11 years ago).

Am I worried? Not really. I know liver issues can be addressed in many ways. I probably won’t die from thyroid cancer. The mole, if a melanoma, most likely will be Stage 1 and require no further treatment other than removal.

I am disappointed. We had already decided that we were not going to overreact if anything new came out of the CT scan. Take our time and weigh our options. But deep down I was confident that there would be nothing new. And now there’s a thyroid cyst. And a liver lesion. Supposedly these aren’t new. Except they feel new.

So is today really any different than yesterday?

This morning I started a gentle yoga class. Not looking for a physical experience. Looking for the serenity to accept the things I cannot change. And the courage to change those I can.

S is for Survivor

Cancer, My Novel- Anne July 17, 2013 Comments: 4

It’s mid-July and farmers are trying to get in a second haying. Trying because we’ve had rain every day for about the last month, with some rainfall significant. This is their window of opportunity as we’re promised a dry spell for a few days.

I always feel like getting back into finishing my book about Anne whenever I smell the freshly mown hay and see the rows lying in the fields, waiting to be bundled into bales or rolled into those gigantic marshmallows that have become the norm. In the book, that’s when Anne feels close to Christian. After “Fifty Shades of Grey,” I’m not certain his name will remain Christian but that’s what happens when it takes you 27 years to complete a project—someone else steals your characters’ names–even your ideas.

Not to imply that I am anywhere near completion. Actually have no idea how much more work it will take for me to finish it but I certainly won’t be able to write “The End” (and mean it) without spending time every day working on it. I keep saying once I get the Chamber tax information to the accountant and all of the visiting family has returned home and the books are closed on the sold apartment building I will have entire days spreading out before me in which I will be able to attack Anne. Sounds so violent. But at least it implies expending energy, which I’ve been lacking. Or is it simply motivation?

Saturday was the Prouty, the Dartmouth-Hitchcock event to raise money for the Norris Cotton Cancer Center—my cancer clinic. Visited the SAG (Stop and Go) site in Newbury that’s sponsored by Wells River Savings Bank for the bicyclists. Katie, herself a breast cancer survivor, had written my name at the top of the memory board. In large letters with an “S” next to it for survivor. Not something I ever expected to see. I don’t mean the “S” of course just my name on display as a victim of cancer.

I was proud to be standing there as a survivor. Weird.

Why should I be proud? I’ve really done nothing to be where I am at this point. It’s the doctors and other health professionals who have gotten me here. And they are the ones we should be honoring.

Kindle

Family, My Novel- Anne, Writing July 16, 2013 1 Comment

My 85-year old mother asked for my old Kindle. I was surprised but thought she wanted to be able to read the same books that I’ve read, a compliment to my reading taste, though I wasn’t certain how she would react to the “Fifty Shades” trilogy. This was my original Kindle and the battery empty screen had been visible for a long time so it took a lot of charging and restarting to get it to fire up.

We were sitting on the couch and I showed her the Kindle, explained that it would take a while for me to teach her how to use it. I showed her the nine pages of books that had been downloaded onto it. She wasn’t interested in those, however. Said she had plenty of her own books stacked on her nightstand.

She wanted to read my book. I laughed. And laughed.

Somehow she had gotten the impression that the novel I have been working on since 1986 was on the Kindle. I’ve been struggling with which of my many writing projects I am going to tackle. Suddenly it is clear. She wants to read my novel before she dies. I want to finish my novel before I die. So Anne it is.

I’d love for her to be able to read it on my Kindle. That would mean it was a published novel! The reality is that is years away, if ever. Even if I can complete it by the end of this year (impossible!!), I’d need to find an agent and whatever else happens after that I don’t know except I am certain it would involve a lot of time. Something I may not have. So maybe I will have to consider self-publishing IF I ever finish the novel. I’m not opposed to that. If the alternative is never to see it in print before I die I will do it.

But first I have to finish it……

Back to Normal

Cancer, Family, Mitotane, Writing July 15, 2013 Comments: 2

Back to my regular schedule with Steve at work after a two week vacation (his first ever!) and the girls and families returned safely to Arizona and Virginia. Steve’s brother and his wife are staying at the cabin a while longer but four of their daughters and families have headed home to PA and Maryland. As wonderful as it is having them all here it’s such a whirlwind that I can’t help but feel a sense of relief now that it’s over. I imagine they all feel the same way.

It’s hard for me not to wonder if this will be the last 4th of July that I share with everyone. My daughter the PA chastises me when I even dare to voice such an idea. She says I need to accept that the surgery cured me—I no longer have ACC. And why do I take mitotane with all of its side effects she asks. She sounds like my oncologist.

There isn’t proof that a regimen of mitotane for Stage 2 ACC patients is beneficial. But the experts at the University of Michigan that I have decided to rely upon recommend it for three years.

So I am heeding their advice despite the spells of vomiting, diarrhea, and nausea that I experience, one of which I had over the holiday. I thought it was self-induced as I couldn’t restrain myself from eating the typical patriotic fare: hot dogs, macaroni salad, cole slaw, chili, chips and dip (instead of my usual Campbell’s chicken noodle soup and pumpernickel with cream cheese). And don’t forget the s’mores.  But who could resist those?

Turns out what I ate may not have caused it. My latest mitotane reading put me in the toxic zone so I am now on a mitotane vacation for a week!! And then I get to reduce my dosage by two pills a day. Anxious to see the impact on how I feel.

Eleanor from my writing group emailed me, asking how my writing was going before she acknowledged that with all of my family around I probably hadn’t done any. It’s heartening to have others come up with excuses for me, saving me the effort. My own excuse is that I have projects, too numerous to list, to catch up on. Since I’m not working, I should still have a block of time that I can devote to writing.

Yet which of my in-process writings will I work on? Wouldn’t it be nice to pick one and finish it?              

Revising

Cancer, Writing July 12, 2013 Leave a comment

I love the process of creating, of writing something for the first time, however crappy the result. Spending hours and hours creating new worlds and filling them with people I love. And those I don’t.

On the other hand, I detest revising and I doubt the sincerity of those who claim that it is their favorite part of writing. I’m envious of those in my writing group who excel at it, accepting the group’s “constructive criticism” with aplomb then returning a few weeks later with a new (and generally improved) version. (Not certain that they love doing it, however.)

So I was excited to read an article on revising in the Sunday Boston Globe Ideas section. Craig Fehrman focuses on Hannah Sullivan’s book on the history of revision. At the very end of the article I finally got to the part I was hoping for, that revising is highly overrated and even a waste of resources (in my own words—you’ll need to read the article for your own interpretation).

Writing a blog satisfies my need to write without spending much time revising. Sort of writing in a journal, flow of consciousness, where the goal is to get my thoughts down on paper before they disappear. And before I have a chance to evaluate their quality. Edit out the emotion. The real me.

I would be happy to put the effort into revising my life however. Edit out the crappy part known as adrenal cancer. Return to the life I used to occupy, one where I went to work every day, put money for retirement into my 401(k) every paycheck, squeezed in time to write, kept busy every second of the day, and rarely got sick.

I say that but now that I’ve left that world, would I seriously want to return to it?

Relinquishing Control

Cancer, Family, Writing July 7, 2013 1 Comment

Relinquishing control is hard. With the 4th of July festivities and the welcome invasion of family (this year 31 of us, 15 kids—not all in my house thankfully!) I am more or less forbidden to take charge of the food preparation and entertaining. That honor after many years of being my domain has been passed to the next generation. It’s hard to sit back and watch my daughters and nieces prepare the salad and heat up the beans while I am forced to lounge on the couch with my sister-in-law. (Turns out they took pleasure in their view from the sink of the two mothers doing nothing but chatting with each other!)

My form of relaxation until now has been to be busy, busy, busy, making sure that people have full glasses of wine, that the meat comes off the grill at the exact moment that the sides are lined up on the counter ready to go, that everyone has a plate, napkin, and a place to sit. It doesn’t mean I’m not proud that they are more than capable of doing as good a job, if not better, than I would have done. To see them work together is gratifying. It’s just that I expected this transition to happen in the somewhat distant future.

Now I am expected to take a nap in the afternoon, to look out for myself. To control my well-being instead of my guests’. Not only am I having a hard time accepting this, I actually resent having to think of myself before I think of anyone else. But one benefit is that my sister-in-law and I, both aspiring authors, have more time to talk about our writing–or rather our lack of writing. She will be here for a while after everyone leaves and that will give us even more time to continue this conversation!

Since November I’ve had to turn over control of my life to my cancer. It’s decided how I feel. What I can eat. What I can do. And especially when I can do it. There’s been a lot that I can’t do but I’m gradually getting back into things, like Pilates and yoga. And walking with Judy on her lunch break. My lunch break? Whenever I want it to be.

Turkey Dreams

Mitotane, Writing July 1, 2013 Leave a comment

Last night my first eight “testing the waters” blog entries were critiqued by my writing group. Their comments were encouraging but I can’t help wondering if it is sympathy due to my cancer… self-doubt always trumps being able to graciously accept compliments. John distributed samples of blog postings, which I read when I got home. Some were truly atrocious. I am confident I can produce something worth reading yet will my blog become my focus, taking time away from my “real” writing? I feel (hope?) that the blog will more likely prime the pump, dragging me to my laptop, away from my beloved HGTV. Yet this morning I am struggling with this post and only CNN is on with the volume down to 1.

thanksgivingdinner

I awoke this morning to a dream of a turkey dinner being prepared for me, Thanksgiving I think, and the cook was heating up the package of squash that I have kept secured in my freezer for months, not for a turkey dinner but in case I wanted to make squash soup.

 

Who am I kidding?

I have prepared so few meals since my surgery that it is more likely the squash will be heated up as is and eaten with a grinder from Village Pizza than that it will be transformed into an appetizing soup. I am certain the dream arose from our discussion last night about my post pitying my family for having to eat Thanksgiving dinner in the hospital cafeteria. It’s too early in the morning to be talking turkey—I haven’t had my raisin toast yet or my yummy mitotane/hydrocortisone/ondansetron/metoprolol/pantoprazole/loratidine dessert! Remember, magic resides in those pills.

Dow has dropped 353 points over the past two days. Ouch. Now that I am retired this means a heck of a lot more than it did when I was still working.

James Gandolfini dropped dead in Italy yesterday. Apparent heart attack. I, at least, am forewarned. A young woman on the ACC Compassion site has died. She was forewarned. I hope she was able to take advantage of her remaining time to squeeze in a full life, albeit condensed. Not likely if she was undergoing treatment.

Quality of life and all that.

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